Hi, I sourced my own natural thyroid for 3 years but can no longer afford it.
GP made me go 4 weeks with no meds. I had a blood test Tuesday and lab called her to say my TSH was 65. I've not got the rest of the result yet.
I feel awful. She has started me on 25mcg Levo and will be increasing it on monthly intervals based on blood tests which means it could be some time before I feel better.
Any advice what to ask/ how to proceed would be welcome. I live in west Yorkshire if anyone has found helpful resource / doctors locally.
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Pinebunny
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That is dangerous. There is something called myxoedema coma which is an extremely serious issue. It occurs when thyroid hormone levels are very low.
25 micrograms is dreadfully inadequate. In the circumstances, you should have been given at least near-full replacement dose straight-away. No wonder you feel absolutely awful.
Unless very old, infirm or some other medical reason, 25mcg is not sufficient starter dose. Check British Thyroid Association guidelines for hypothyroidism or NICE guidelines. Starter dose for otherwise healthy adult should be 50mcg or higher if tolerated. Test blood every 6 weeks and increase dose until TSH is around 1 which is where most people feel well. Find the relevant guidelines and take them to your GP and ask for dose increase. Given that you were already taking thyroid hormone a full dose should be tolerated.
For your background, clinical knowledge summaries (CKS) may be accessed via the NICE Evidence Services website, they are designed to summarise the evidence on the treatment of specific health conditions; however they do not constitute formal NICE guidance.
I know they are guidelines but together with the British Thyroid Association Guidelines, it's all we've got until 2019 when NICE creates the new resource for treatment of thyroid conditions. Any other suggestions?
The trouble is anyone who is not 100% on the ball assumes they are full formal NICE guidance.
It isn't referring to the CKS that is an issue - they are potentially very helpful and were revised not that long ago - but the impression people might get of their status. And that it is so very easy to slip into referring to NICE guidelines... in their future posts.
I do have a suggestion for this particular issue:
The documents (SPC and PIL) on the EMC site say 100 micrograms (and note the bit I have underlined) - for example:
4.2 Posology and method of administration
Posology
In younger patients, and in the absence of heart disease, a serum Levothyroxine (T4) level of 70 to 160 nanomols per litre, or a serum thyrotrophin level of less that 5 milli-units per litre should be targeted. A pre-therapy ECG is valuable because ECG changes due to hypothyroidism may be confused with ECG evidence of cardiac ischaemia. If too rapid an increase in metabolism is produced (causing diarrhoea, nervousness, rapid pulse, insomnia, tremors, and sometimes anginal pain where there is latent cardiac ischaemia,) dosage must be reduced, or withheld, for a day or two, and then re-started at a lower dose level.
Adults: Initially 100 micrograms daily, preferably taken before breakfast or the first meal of the day. Adjust at three to four week intervals by 50 micrograms until normal metabolism is steadily maintained. The final daily dose may be up to 100 to 200 micrograms.
Elderly: As for patients aged over 50 years.
For patients over 50 years, initially, it is not advisable to exceed 50 micrograms daily. In this condition, the daily dose may be increased by 50 micrograms at intervals of every 3-4 weeks, until stable thyroxine levels are attained. The final daily dose may be up to 50 to 200 micrograms.
Patients over 50 years with cardiac disease:
Where there is cardiac disease, 25 micrograms daily or 50 micrograms on alternate days is more suitable. In this conditions, the daily dose may be increased by 25 micrograms at intervals of every 4 weeks, until stable thyroxine levels are attained. The final daily dose may be up to 50 to 200 micrograms.
For patients aged over 50 years, with or without cardiac disease, clinical response is probably a more acceptable criteria of dosage rather that serum levels.
25mcg is ridiculously small dose. Especially as you have been on NDT for years
You will need to increase to 50mcg asap, and increase in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Essential to test vitamin D, folate, ferritin and B12.
Extremely likely dire after 4 weeks with no meds
Always get actual results and ranges. Post results when you have them, members can advise
For your background, clinical knowledge summaries (CKS) may be accessed via the NICE Evidence Services website, they are designed to summarise the evidence on the treatment of specific health conditions; however they do not constitute formal NICE guidance.
Your doctor has no idea that to not provide levothyroxine because you had been taking NDT is ridiculous. How do we have to suffer so much through inept doctors.
25mcg is ridiculous and she should have swapped your dose of NDT to an equivalent of levothyroxine at the very least. Blood tests should be every six weeks with an increase until you feel much better with a TSH below 1 with FT4 and FT3 in the upper part of the range.
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